For many years, I worked as a Program Coordinator and Family Caregiving Consultant at the Alzheimer's Association and Del Mar Caregiver Resource Center. During that time I wrote a monthly newsletter for families taking care of loved ones with progressive incurable memory loss and dementia. Those articles are now a book, and this blog was created to share it (and any new articles I write) with all of you.

Wednesday, August 26, 2009

This may be a controversial article, especially since as far as I know nobody has done studies on this phenomenon to date. Certainly, living with someone with dementia can create codependency. That was the heart of my practice when I was a caregiving consultant. But nobody that I know of has written about the case in which the disease goes the other way around.

First, let's try to define codependency. This is a term very familiar to those in Alcoholics Anonymous and Al-Anon to describe the dynamic that frequently occurs between the alcoholic and those who have to live with one. Basically, the codependent person gets trapped in a system of trying to compensate for the alcoholic's behavior in a variety of ways—everything from constantly monitoring how much a person drinks to covering for them when they've drunk too much. It takes constant vigilance to cope with being in a relationship in which a significant portion of the day is spent avoiding or coping with the aftermath of giving in to an addiction. There's no criticism intended in this description. But the inevitable upshot of the dance that occurs enables the alcoholic to continue their dysfunctional and dangerous behaviors because they never wind up taking responsibility and living with the consequences of their own actions.

Unfortunately, the codependent is usually just as addicted as the alcoholic. They are addicted to being needed, to being the competent one, to being the one who "really is in charge", etc., etc. And it's not just family members of alcoholics who wind up adopting these addictive coping behaviors. Anyone who grew up with a parent with any kind of disorder that made them undependable or even a little dangerous will have tended to develop a number of behaviors meant to help control the crazy circumstances they live within. Children of abusive parents and those with mental illness are a prime example. "What do I have to do to keep dad from hitting me?" "How do I handle the fact that mommy isn't making us dinner?" Children who live in these circumstances can become super-competent. That's the good part. The bad part is that they become terrified to do anything else.

A codependent personality always has their attention on someone else. In my caregiving practice I would say "How are you?" and nine times out of ten whoever was sitting in front of me would tell me about their Alzheimer's patient instead. Seriously. I'm not exaggerating. I met with hundreds of family caregivers in a year. Most of them couldn't answer the simple question of how THEY were without being asked twice.

Every once in awhile a caregiver would say "My mom was always the one everyone depended on. She was the caregiver for the whole family. She took care of both her parents until they died. She took care of my mentally ill sister. She took care of our grandparents and my cousin Mary, too!" Now she's finished with her caregiving duties and what happens next? She can't even enjoy it because now she's been diagnosed with dementia, too!"

The first time I heard that story I felt bad for the person involved and thought "how terrible!" The second time I heard it from a different caregiver I thought "that's sad and how interesting that it's happened here, too." Then I heard it again and then a fourth time. It wasn't the most common story I heard. THAT story was "Mom was perfectly alright until dad died!" But it was a variation that made me wonder.

Right now I'm living with someone who has such acute codependency behaviors that she worries and talks about other people —and ONLY other people—all day long. ALL DAY LONG ALL THE TIME. She does not have Alzheimer's disease. But she can't concentrate on her own interests and things she wants to do at all. She leaves food on the stove to burn while she takes care of a stranger's problems on the phone—even a telemarketer gets her undivided attention. She loses things every day. She forgets things that she "cares" about all the time. But not other people. Other people are the only thing in her view.

If you were to step into this situation and see it from the outside you would see behaviors that smack of dementia. But her family members say, no! She's been this way most of her life. She's always been the caregiver. It's just a little worse now because she doesn't actually have a person who really needs caregiving these days and she does have a little age-related memory loss that contributes to the problem now. She WANTS to be caregiving! She's constantly getting into other people's business and attempting to do so until they get mad and tell her to go away. And she can be extremely engaged and competent when she gets set loose. But without it. . . she doesn't know what to do, she gets a little batty, she withdraws her attention from life and acts out addictive behaviors like constant TV watching on her own. And she acts like a little girl who needs watching over. . . which was probably the truth when she believed she needed to do the caregiving she no longer knows how to do without.

It's what I suspected when I worked for the Caregiver Resource Center. I'm seeing it acted out in front of me on a daily basis now. Give a person with "dementia" a job where they feel like they can take care of someone else and many of them come back to life. I heard about that time and again. I only wish I knew how to help this person and those of you dealing with someone like them now.

Thursday, August 13, 2009

Note to spammers who intend to leave vicious comments about the evils of Socialism and "Obamacare": I moderate all my blogs. Don't waste your time here.

Healthcare reform is THE most important thing on the national agenda right now. I burnt out on my last job working with caregivers of people with Alzheimer's and other dementing illnesses NOT because of the sadness of illness and death. It was the stories of people going into bankruptcy and facing financial devastation in addition to the heartbreak they were going through that got to me. Now the job I had at that agency might not even exist anymore. The California legislature just cut that agency's funding by 73%! Now even the inadequate level of care we were providing there won't be available. We need reform NOW!!